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Showing posts from July, 2012

Home Again, Home Again, Lickity Split!

Maggie's adorable hospital gown After surgery, sleeping soundly Her new back Giraffe spots from the leads Tummy time with big sister Maggie continues to exceed all of our expectations. After a successful surgery yesterday we were expecting at least two or three days in the hospital. She did so well with her feeding and pain management that the doctors said there was no reason to make us stay any longer. We brought her home this afternoon.

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Surgery and Date Night

Maggie got out of surgery around 3:30 this afternoon. All is well. She's now doing what 8 day old babies do...sleeping. She isn't on any pain medication, but we will monitor it and see how she responds. The recovery room nurse couldn't believe how much sensation and strength she has in her legs. Hopefully we'll be here for only a couple of days. For the first time at Primary's we are in a shared room. It's just us for now, but the nurses say to plan on company...yuck! And I can guarantee you that mine will be the quiet child.

This is our 8th time of walking away from our kids as they are wheeled off to surgery. It's amazing how much more relaxed we are now. Matt and I both took needed naps in the waiting room. I wondered if other parents thought, "How can you be sleeping at a time like this?" Then we went downstairs for lunch. Matt and I have been enjoying a lot of time together with bed rest and hospital stays. I have realized tha…

Surgery Tomorrow

Tomorrow at noon is Maggie's surgery on her back. Tonight we are spending family time up at Primary Children's while Maggie gets blood work done. Just walking into the lab makes me light headed. I look around and see vials and needles, faint. I'll be sending Matt back with her for the actual poke.

I hate that we won't be together as a family tomorrow night. Life has been unhinged for months now, and I'm just tired of it. There's my complaining.

Matt's parents, my sister and friends are so great to help with the K, J, & D. This has been a great summer for the kids...always having sleep overs and fun outings. I've heard about twenty times today, "I'm bored."

 Is it bedtime yet?





Home

Baby Maggie is home.  We are loving having our new addition.  The kids can't keep their hands off of her.  Josie gives a play by play of every grunt, wriggle and eye opening.  Kate is so aware of her needs and runs all over the house grabbing diapers, new outfits and ice water for her Momma.  The night we brought her home, Davey held her and said, "Look.  It's wonderful!  She can wiggle her toes!"  He said it over and over, not realizing the full impact of those words.

The hardest part is cathing her.  We do it three times a day.  It takes both Matt and I working together, and we have to keep everything sanitized.  Matt is much better at it than I am, but I'm getting there.  We added up how many catheters we will go through in a year between Maggie and Davey.  The number was close to 2,900!  Our spina bifida support group friends say it gets easier, but when?

The best part is smelling her sweet skin.  Now that her swelling has gone down and she's out of the…

Tomorrow, You're Only a Day Away!

What a great Sunday! I'll skip to the best, most important news, Maggie is set to come home tomorrow.

The past few days have been wonderful as she's checked off her to-do list from the doctors. What a productive girl! The nurse told me today that the skin on her back has grown a centimeter. So that big yellowish area on her back is a patch that the neurosurgeon in Houston put on because he couldn't pull the skin tight enough. Opinions have differed, but I think the current consensus is that Maggie's skin will grow over and cover the patch. If her skin does not show sings of significant growth, they will do plastic surgery to close it. For now, we have a dressing that we put over it and change often. We cannot put any pressure on her back, so she lays on her side and will ride in a special carseat. In the NICU, a nurse is with her 24/7 to make sure she is positioned correctly. Not sure how Matt and I will swing it, but we've had to do that for Davey a coup…

Answers (At Least a Few)

Last night we got some clarity with some of the questions foremost in our minds. The neurosurgeon was able to visit Maggie and review her CT scan. He saw nothing of concern suggesting the need for immediate surgery. Maggie's ventricles seem fairly typical and the pocket of fluid at the rear of her brain is not under pressure indicating that it is not a concern at this point either. The doctors will continue to monitor her fontanelle and head circumference in the coming days to determine if anything changes, but for now, no worries with her brain.

Yesterday Maggie was receiving pressure through her breathing tube but was breathing room air (so no oxygen was being pumped in with the pressure). After the neurosurgeon saw Maggie he said she could take nutrients through her feeding tube until the pressure through her breathing tube could be reduced at which time she could begin taking a bottle and start nursing. Through the night the nurses systematically reduced the pressure unt…

Top 10 Questions

1. Why hasn't a real neurosurgeon, not a resident or med student, come to visit my daughter? 2. Why hasn't my daughter been able to eat since she was born? 3. Why does her back look yellow? 4. When will the neurosurgeon find time in his all too busy day saving brains to look at my daughter's CT scan? 5. Will my daughter need surgery for a shunt? 6. When will my daughter get a renal ultrasound? 7. When will we need to start a catheter for my daughter? P.S. Same question about my son. 8. When can my daughter lay on her back? 9. When will we know if her vision has been affected? 10. Why is Matt soooo good looking? Question, did Matt write this or Millie?

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Life Flight :)

Maggie has been transferred to Primary Children's. She is now in the NICU over there and was "Life Flighted" across the walkway between the two hospitals. The same thing happened to Davey four years ago when he was born. It sounds so glamorous but really just entails two Life Flight pilots walking Maggie across in a special incubator case thingy. They were able to wheel her over to see Millie before they left the U and the kids had just arrived so the timing was perfect. Maggie seems to be progressing and they will continue to monitor her lungs and breathing in the coming days. We may start to find out more about her ventricles etc. tomorrow but we'll just take it a day at a time. Millie doesn't get any cell service at the U so she hasn't been able to respond to any voicemails or texts. Her pain is being managed and she is doing great. She misses Maggie though, and hopes I can take her over to see her new daughter later tonight.



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Millie Meets Maggie

Millie got to hold Maggie for the first time. The news team was there to document their reunion. Maggie squawked and wiggled her toes. When Millie caressed the sole of her foot Maggie immediately extended her toes and flexed her leg muscles. It's touching for us to see these small signs present in Maggie that were absent when Davey was born.

Our love and excitement to see Maggie is tempered by the seemingly ever present monster that is insurance. Maggie is still in the NICU at the University Hospital which is bad. She was supposed to be transferred immediately to the unit at Primary Children's--that was the plan and the outcome that needed to happen so that her delivery would be covered by our insurance. Now Primary Children's is saying that they don't have room for her and she'll have to stay at the U. Millie's been working the phones--it's sounding like they're learning quickly something that I discovered long ago: don't mess with Millie…

She's Here!

The c-section went beautifully, Maggie was delivered at 10:17. She's 6 lbs 13 oz and has a smattering of Davey's hair, my chin, Millie's voice, Kate's ears, and Josie's temperament. Her lungs seem pretty immature so she's in the Newborn ICU for now.

Millie is back in her pre-op room and has not yet been able to really see Maggie. Immediately after delivering her the doctors whisked Maggie into the NICU in the adjoining room. I've been able to see her in there and have shown Millie the pictures. The lesion on her back looks good--it looks like a patch of skin covering what used to be the hole that was there. Her feet don't have any noticeable clubbing and she definitely has more sensation there than Davey did. We are so grateful that she is here.





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